Оглавление
1. Встреча
On February 2nd, 2016, the founder of the Дипломатическая организация Аустана was invited to answer questions from autism professionals at a center for autistic children – association Рука в руке (“Hand in hand”) / Autism.kg – in Bishkek, the capital of Kyrgyzstan.
The center is well-equipped with various rooms, and the staff appears to be both skilled and dedicated.
Click on a question to navigate directly to it:
- 0:00:00 – Beginning
- 0:00:38 – “Can you tell us about yourself ?”
- 0:01:31 – “Did you have problems in your life without knowing that you were Asperger ?”
- 0:09:38 – “In the case of a 9 y.o. boy I am working with, when I ask him something, he will be engaged in something going on in his head during at least 40 seconds before giving an answer…”
- 0:19:40 – “About problems building relationships with other people…”
- 0:22:56 – “Do you depend on these relationships, or actually you don’t need it ?”
- (0:29:28 : Here there is an error :
“If 27 is good, 27 cannot be good” should be
“If 27 is good, 22 cannot be good”
(It is in a description of the “problem of excessive heating in the bus” (see a section about that, below in this page))) - 0:41:37 – “What about here (Kyrgyzstan, Kazakhstan…), where people are a bit more “rude” or straightforward : is it easier for you, or not ?”
- 0:44:44 – “Do you have a close relationship with someone ?”
- 0:57:11 – (comparison with swimming pool – the barriers – the things which are new)
- 1:08:41 – Autism and coherence / consistency / logic / justice
- 1:28:30 – About motivation and ABA
- 1:34:14 – About imitation
- 1:53:29 – About “trying” : the comparison with the 100 doors
2. Problem of excessive heating in the bus (one day before the meeting)
2.1. Summarized description
In January 2023, during a wintry journey from Almaty to Bishkek, I found myself aboard an intercity bus, a cozy van accommodating about a dozen passengers. Despite the freezing temperatures outside, the interior of the bus was a stark contrast, as the driver had cranked up the heating to its maximum setting, a common practice in such vehicles.
As an individual on the autism spectrum, I struggled to endure the stifling heat, feeling as though I might faint. Attempting to remedy the situation, I politely requested the driver to lower the temperature. Unfortunately, his response was not only unhelpful but exacerbated the issue as he inexplicably switched off the heating entirely.
Soon, murmurs of discomfort filled the air as other passengers began to complain about the plummeting temperature—a direct consequence of the driver’s misguided actions. Despite my attempts to offer a solution, suggesting a middle ground on the temperature control knob, the driver adamantly insisted that such adjustments were “impossible.”
With my limited proficiency in Russian hindering effective communication, the situation grew increasingly challenging. However, a stroke of luck came during our mid-journey break when I managed to secure a seat in the front row, positioned just a seat away from the driver. Seizing the opportunity, I discreetly documented the situation, capturing evidence of the malfunctioning heating control.
It appeared that the passenger seated next to me conveyed my actions to the driver, prompting a sudden change in his demeanor. Almost miraculously, he adjusted the temperature control knob to a more tolerable setting, finally alleviating my discomfort.
This incident serves as a poignant example of the “socio-generated harm” often inflicted upon individuals with autism. Beginning with sensory discomfort—such as in this instance—the situation escalated due to a lack of understanding and consideration from the social environment. Attempts to advocate for change were met with resistance, ultimately resulting in feelings of injustice and frustration.
As I frequently emphasize, the core issue lies not with autism itself but rather with the failure of society to adequately accommodate and understand the needs of individuals with autism. It underscores the importance of fostering a more inclusive and empathetic social environment, one that prioritizes sensitivity and intelligence over indifference and routine behaviors.
Eric L.
2.2. “Normal excessive heating” (26-28°C)
Here is an example of when the temperature was “normal” for the passengers
No one seems to be suffering.
2.3. People saying that it is cold (outside), and attempts to ask to lower a little the temperature inside
(In poor Russian and English)
2.3.1. Approximate transcription of this video
It’s cold. (outside)
It’s cold now. (outside)
Speaker 3 (autistic)
It’s cold ? 28…?
I don’t understand.
I don’t ask exactly 22.
Just lower a little bit. I don’t ask exactly 22, of course.
Just a little bit less hot, please!
2.4. Live description of the problem
(In French)
2.4.1. Transcription of this video (translated in English)
I’m living a rather horrible situation. It’s 28°C in there, it is super hot for me.
Nobody cares at all, people are not feeling hot, [although] they’re dressed like that.
I asked to lower the temperature. They are unable to do anything other than turn off the heating.
Now it’s too hot. But when they turn off the heating, after 30 seconds it’s too cold [of course!].
It’s a crazy story.
2.5. “Solution” of the driver (20°C and going lower (and people complaining))
2.6. Finally a sign of attention or intelligence from the driver (23-24 °C)
23-24°C is the “normal” temperature range recommended in the planes, for example.
After 2 hours of “nightmare” and struggling against stubbornness, we finally reached a solution.
And no one complained about feeling too cold, with 23-24°C.
It is important to understand that the “corrections” needed for autistic people are not bothersome for “normal” people.
They are simply refinements, thoughtful and considerate adjustments, enhancements.
2.7. Recording after the problem (analysis of what happened)
This recording is in English and Russian, but there is a transcript in English below, and this page is automatically translated in many languages.
2.7.1. Transcription of this audio
And he said, I don’t know what he said in Russian, but he did not want to change.
Can you translate in Russian?
You have to take a taxi. And me too I was upset because it was 22, 23. The temperature was 22, 23.
It was so easy.
And everyone was driving and at the end the temperature was OK. Why it was so easy, why there were so many scandals? Why it was impossible to put it at once?
I hope that… OK, thank you. Thank you.